Caregivers, or Care Partners, for Myeloma Patients (https://www.myeloma.org/caregivers-or-care-partners-myeloma-patients)
Myeloma Care Partner Support and Resources
What Is a Care Partner?
A care partner stands alongside a person with multiple myeloma, helping with daily tasks and decisions. Unlike the word "caregiver," which can sound one-sided, "care partner" shows that both people are working together. The care partner might be a family member or close friend who helps with treatments, offers emotional support, and meets the patient's needs.
As the care partner, you play an essential part in the myeloma journey, not just as a helper but as a supporter, ally, confidant, and so much more. Often, the care partner takes on the role of:
- Learning about the complexities of multiple myeloma and treatment.
- Managing schedules and daily tasks that were previously shared.
- Attending to insurance-related issues.
- Making important financial decisions.
- Planning for and assisting with the patient's needs day-to-day while managing their own needs.
If this sounds overwhelming, it is. But the International Myeloma Foundation is here for you!
This is why the IMF created this Care Partner section. We encourage you to navigate the links on the left-hand sidebar of this page to begin your journey. Also, consider reaching out to our InfoLine team (https://www.myeloma.org/infoline) if you need more information. To become more connected with other care partners, become a member of the Care Partners-Only support group (https://www.myeloma.org/support-group/care-partner).
At the International Myeloma Foundation (IMF), we use the term "care partner" rather than "caregiver" because this reflects the vital role you play in providing care and sharing the journey as equals, advocates, and sources of strength. Multiple myeloma care partners manage complex treatments, coordinate care, and provide steady support when it matters most.
Myeloma Made Simple: Care Partners (Caregivers) Made Simple | What Is a Care Partner?
Discover the vital role of care partners in supporting individuals with myeloma. In this video, IMF Chief Medical Officer Dr. Joseph Mikhael is joined by IMF Vice President of Patient Support Robin Tuohy, who is also a care partner to her spouse, Michael. Together, they highlight the importance of care partners, explore their challenges and responsibilities, and provide valuable insights on how care partners can best support their loved ones.
Essential Resources for Myeloma Care Partners
You need knowledge and patience to support someone with multiple myeloma. Care partners have to deal with complex medical details, coordinate treatments, and provide daily support while managing their own well-being. Access to clear, reliable information about treatment options, symptom management, and communication with healthcare providers is essential.
Care partners also need resources that help them find balance, manage stress, and connect with other care partners. Having the right tools and support can make a profound difference in facing this journey together.
Multiple Myeloma Care Partner Support and Self-Care
Care partners must prioritize self-care to sustain the energy and focus needed to support someone with multiple myeloma. Stress and exhaustion can build up quickly for care partners, affecting your health and ability to provide the care a myeloma patient needs. That's why you should set boundaries around your time. Set aside time for rest and activities that recharge you, even if you have to say no occasionally.
Also, don't hesitate to ask for help and reach out to friends, family, or professional services to ease your load and provide valuable breaks to regain your strength. There's a reason you have to put on your mask before helping other passengers on a plane.
While the journey can seem overwhelming, creating moments of normalcy can help. Engage in hobbies or routines unrelated to caring for the patient to help maintain your sense of self.
Deciding on Palliative Care
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Palliative care may be needed at any time during treatment, but is most often needed at the end stage of the disease. When a patient has tried and exhausted the full range of approved and experimental treatments available, and the myeloma has become refractory or resistant to treatment, it's time to weigh in on the benefits and drawbacks of continuing versus stopping treatment. Each patient must make the decision on their own.
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Find Strength and Support to Care
Caring for someone with myeloma might not be easy, but you need to acknowledge how much you're giving each day. Fortunately, you don't have to carry this alone — the International Myeloma Foundation offers downloadable resources to guide and connect you with myeloma care partner support. Access the resources you need (https://www.myeloma.org/patient-caregiver-information) and remember to take care of yourself just as well as you do your loved one. Get involved in myeloma advocacy (https://www.myeloma.org/take-action/advocacy) or get in touch with us for more information.
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